Thursday, April 30, 2009

Jonah's doctor's appointment went well today. The doctor decided not to do the blood draw yet (the geneticist appointment is not until September), so that was good. He got three shots in his upper thighs, but besides crying a little when they went in, he quickly recovered.His height, weight, and head size are all about in the 25th percentile. She's happy about his growth. Developmentally (smiling, laughing, cooing), she said he is a little behind, but that is typical for hospital babies... especially one with as much going on as he has. He'll smile every once in a while, but it is definitely not a regular occurrence (except in his dreams.) He's certainly very aware of people and voices and will track objects, but as far as expression, he's a little behind. She didn't seem too concerned, and says that should pick up in the next couple weeks.I know his startle stuff is not from his Morphine. He only gets it once a night (an hour and a half before dressing change), and because of his weight now, it's not a mega-dose or anything. Plus, when all of this was going on, the Morphine had long been out of his system. As far as the anonymous commenter who said for me to get him off of Morphine NOW and acted like I was an idiot for not making the connection... We are slowly weaning him off over time (you can't take him off NOW), and when you have blisters all over your body and are getting nightly dressing changes at two months of age, then we'll talk about pain control... that is, if I knew who you were. I want to get him off as much as anyone. I am his mom after all. Once again, it's a hard choice knowing what's right for Jonah, and we're only trying to do the best we can. It's always a lose-lose with him, and if he stays on Morphine a little longer and weighs out of his dose and that controls his pain and gradually weans him (instead of making him go through withdrawal), that's what we'll do. As far as the vaccines, I'm not going to delay vaccinations for a child who is extremely susceptible to infection... infection that could easily kill him. I'll take my chances with shots. Again, we're just trying to do what's best. Anyway, back to the startle, the doctor didn't seem concerned, and said it could just be an acid reflux or gas pain. He hasn't done it anymore since yesterday. Thanks to those of you who said it's normal. Reassuring. Encouraging. Thank you. Matt and I are going out to dinner together tonight while our moms and his dad do drug administration, bath time, and supply set-up for us. That way, we can come in right at 8:00 and get started. Matt gets home around 5:30, so hopefully we'll get about a two hour date. I'm excited, and feel like we definitely need the time out, alone, and together. Although our relationship is strong, anything like this is stressful and takes a toll, and I'm happy to have the chance to hang out a little.Thanks for praying for Jonah's doctor's appointment. We'll see how many blisters it all caused, but for now, it seems it all went as well as possible. And guess what? For being such a big boy at the doctor's office, he got a Cookout cheeseburger for lunch. Oh wait. That was me.

127 comments:

I think it's a very good decision to get him vaccinated! You're doing the best you can to keep him safe! Glad all went well with the appointment. Continuing to pray for all of you.HeatherCharleston, SC

Yay for a good appointment! I'm sure he will look forward to his cheeseburger later :) I think the startle business is normal too and I totally agree with your pediatrician on the developmental things. He will catch up. He just needs some time! I'm just glad he IS home and not still in the hospital so he can start to catch up. Don't worry about the morphine comments. People can be so insensitive. You know what is best for Jonah and no one can make those decisions except you and Matt. You are wonderful wonderful parents and know your child best. Don't ever forget that. Have fun on your date!!!!! Sounds like fun :)Erika from IL

Your doing a wonderful job, do not let anyone or anything tell you otherwise. Your daily blogging has been an inspiration to my family. We have two little ones, age 3 and 1 and we thought we had it rough. God bless you and your family. You have saved our marriage as we now appreciate every moment of our lives together with our children and each other. Enjoy the "date" tonight!

God entrusted Jonah to you. All part of His plan for your lives. You and Matt are the only ones God has equipped to make decisions like those for sweet little Jonah. Don't you worry a bit about those anonymous commentors. I would turn their ability to comment OFF. :)

Enjoy your date night! Glad that you are able to get away, just the two of you, even if it's just for a short time. Erika said this first, but as I was reading I was thinking, "Patrice got the cheeseburger for lunch, but Jonah will get it for dinner!"Take care :)

You and Matt are wonderful parents.You and Matt know your child the best. People can be so insensitive. The person taht made the comment about taking him off morphine NOW do not know what they are talking about. You just cant stop a drug like that. A person must slowly be weaned off the drug. I am glad that Jonah is doing well and that you and Matt get a chance to have some one on one time. Have fun.

I'm sorry you have to deal with rude and tactless comments by people who won't even share their names. I hope you'll cling to the positive ones you get and try your best not to let the others get to you. I admire you for addressing the negativity, though.

I'm so glad to hear about Jonah's good appointment! It sounds like he is doing well, which means you and Matt are doing a fabulous job taking care of him. I know it doesn't seem like it at times, but you are truly two amazing people. I pray you have a fantastic date this evening! You deserve it more than words can say.

I agree with the other folks - you're doing a GREAT job!!! And I'm thanking God (literally, right now) that you were able to let those negative comments roll off your back. I started to comment three times on that earlier post, but each time all I could think of were snarky remarks. And while I certainly don't agree with the anonymous commenter's morphine comment, it's not Christ-like to have a mean comeback. SO, I kept my mouth (I mean, computer keyboard) shut.

Anyhoo, you and ONLY you are Jonah's mommy. And God did NOT MAKE A MISTAKE in that!! God has given YOU special instincts and gut feelings about Jonah - and you are wise in the way you follow them. It is SO good that others are willing to give advice & opinions ('cause we all learn new things all the time!), but heck folks - keep the negativity down!

I'm excited for you - a date with your hubby will be so nice!! I pray that the Lord will multiply your time together & allow your time to be pleasing to Him.

So glad Jonah's appointmen went well. Go Jonah Go!!!!

Prayers from GA,Leanne

Ps - Thanks for sharing your life & precious Jonah with all of us blog stalkers. :)

You & Matt will work with Jonah's doctors to decide what is best for Jonah ... and God will guide you in those decisions. It is so obvious by your writing that you & Matt want only the best for Jonah - and so does God! I pray the Lord's protection around your heart when you receive comments that are not God-directed.

EVERY baby is different. Keep that in mind. (I remind myself all the time with comparing my second child to my first....thy are different!!) The charts and such the doctors use is only an average idea of what a baby should weigh, eat, be at developmentally, etc. I'm sure Jonah will catch up very quickly. Do not be discouraged. And you are doing a wonderful job. All first time moms go through stages where they feel frustrated, depressed, overwhelmed and many more. You know your son the best. Whatever decisions you make concerning him are the correct ones. Sorry to read about negative comments....don't let them get to you! You have way more positive comments and prayers to uplift you. I truly hope you and Matt enjoy your date night. I am looking forward to reading about it!

I guess you have to take the good comments with the bad on blogs. Hopefully, you get some good ideas to help Jonah and that makes it worth it. (I learned about the Nosefrieda suction thingy from your comments and mine arrived today!)

Warning: Soapbox ahead....

It's amazing the stigma our society has against pain relief. Without boring you with a lot of medical jargon...basically when the body is in actual pain, the brain opens receptors for pain relief. (Our bodies make some natural endorphins etc...) Therefore, when you're in pain and are given a medication, those open receptors become filled with the med. With correct amounts, there is no "high." Just pain relief. Now, if I took morphine today and I'm not in pain...I have no open receptors and a "high" would occur.

Yay for a good appointment. Ms. Anonymous is a coward and if he/she knew what the hell they were talking about they would offer their name and a more of a softer approach. Freakin idiot (sorry) You have enough on your plate for people to throw in their opinion, especially when their critical. Whatever, I hope you and Matt have a fabulous night out and enjoy each other knowing Jonah will be in good hands.

Sounds like Jonah is doing great. I know that doctor's appointment was rough...the unwrapping and wrapping, not to mention the shots. As far as being behind...everything was so crazy when Carson was that age (the EB, family illness, circuscision at 6 months, found out I was pregnant again, etc.) that we were kind of glossed over everything else. (I mean, he was ALIVE for goodness sakes.) :-) Anyway...the point is, we didn't really realize that he wasn't smiling and such until much later, when we looked back at the photos. With our first son....lot of smiling baby pictures. With Carson....lots of pictures of a baby who looks really pissed off. LOL.

So....my main point is, we now have a 6 year old who lights up a room with his smile. Definitely keep an eye on those "milestones", but don't let them dictate your life.

I am happy to hear that things are going better. I think unless that person has walked in your shoes and lived what you guys have been going through has no room to throw in their two cents. You guys are wonderful parents and are only doing what you believe to be what's best for him and your family. You are such a strong woman and I admire you for that.

you guys are doing GREAT!! don't let anyone tell you otherwise. the vaccines are a good idea, and so it controlling the pain with the morphine. YOU know your baby better than anyone, and don't let some anonymous poster make you feel like they know better than you. you are doing a wonderful job, and i'm really glad for you that you get to have a bit of time away tonight! have fun!!

I agree with the other commenters... you ARE doing a great job. It's a double-edged sword, having a blog. On one hand, many prayers and much encouragement. On the other, unwelcome and unwarranted opinions. I'm so sorry about that.Try to ignore and release. No need to spend your energy on useless things.You are going GREAT, you are trusting GOD.Keep it up!

I'm so glad you had a great appointment. And I'm even more excited that you get a date night. YEA!!! I know the grandparents are probably excited to have Jonah all to themselves, and he will be getting spoiled while you are gone.

You are doing an awesome job. I find myself praying for you as I drive around town doing normal things, picking up my daughter from school. I pray for your nightly dressing changes on your sweet sweet baby!

Oh Patrice, I'm so happy for a great appointment and so sad that some people will attack ANYONE. There are so many things I'd like to say about that but I know that isn't what you want. You are an amazing person and a wonderful Mommy. Fortunately for your anonymous poster, s/he knows everything, unfortuantely for the rest of us s/he feels the need to share!

Don't let the negative comments from people make you feel discouraged. We here on the outside aren't privy to all the information/advise you get from Jonah's doctors. You are the ones who are equipped to make the best possible decisions regarding his care. From what I can tell, you are doing an incredible job. Jonah is growing and thriving.

Glad the appointment went well! So sorry for the the rude comments. You and Matt are doing an incredible job caring for Jonah. Don't let anyone tell you otherwise. I don't even remember how I found your blog, but I check it several times a day to find out how Jonah is doing. You just keep holding him, spoiling him, and showering him with your love.

I'm glad you and Matt are going on a date! That's so important! Have fun!

So glad that Jonah's appointment went well! I have and will continue to pray for you and your sweet little boy!I want to encourage you with a bit of advice that was given to me when I was pregnant with my first child. A friend of mine said, "Throughout your parenting experience, people will be quick to give advice and many times it will be welcome and wonderful advice. However, there will be times when someone will give you advice that you don't need or that isn't appropriate for your child (you know God created all of us in a unique way and no one thing works for each of us). It is at those times when you need to remember that you are the MOM for this child and God has chosen YOU to raise and make decisions for this child." So, trust your instinct and God's leading in your life as you make decisions for Jonah. You are doing a GREAT job!

Well, I missed the anonymous comment about morphine, but it doesn't matter.

When our baby was nearing the end of his earthly days, our hospice nurse advised us to go ahead and pick up a Rx for morphine so we'd have it on hand if/when he needed it. She called morphine a wonder drug, and since we trusted her to the hilt, we agreed, even though we didn't have to like it.

Mary was here checking Jeffrey the day she deemed it necessary for him to have his first dose due to respiratory distress. She prepared the syringe and inserted it into his mouth for a partial dose before handing the syringe to me so I could finish.

I hated - HATED - the thought that our situation, which seemed surreal, had come to that, that I was having to give my BABY a heavy-duty narcotic. I had vowed to do whatever it took to keep him comfortable and safe, though, so if it took morphine for that, then so be it. I said a(nother) quick prayer and finished off the syringe (well, Jeffrey finished off the syringe).

What I discovered quickly was that morphine WAS a wonder drug. If Jeffrey was in distress and sleepy, it enabled him to sleep. If he was 'just' in distress, it enabled him to relax while he remained awake and alert. A genuine THANK GOD he never experienced any side effects, so we were able to utilize it until the end.

When my dad's days were obviously numbered, we got morphine for him, too, and he was able to sleep soundly for the first time in months.

I think your idea of letting Jonah simply outgrow his dosage is a good one; not only would it be a natural weaning, it would eliminate the need to add one more thing to your already-overflowing plate.

You're doing a terrific job with this assignment, even when you may wonder at times.

I guess with having such an open-ness about Jonah and your situation you are going to occasionally get ignorant people who comment. Maybe they really believe their comments are beneficial(speaking of the person who said off the morphine NOW). I guess all we can do is forgive/forget and go on.I totally agree with everyone else that you are doing a great job with Jonah and not being there with you- all of our comments are created from the little snippets of what we understand about your life from what you say on your blog.God Bless you, I pray your time with Matt tonight would feel like much more than a few hours and that you two would re-connect and feel refreshed.I continue to pray for Jonah that he would continue to gain strength and live a healthy life.Carlee

Don't listen to the nay sayers. They aren't walking in your shoes. You are doing what is best for your little pumpkin. Anyone who looks at his pictures can see that he is well taken care of and happy. Continue being the awesome parents that you are and enjoy your time together tonight. Jonah needs happy parents!

Do not let some peoples comments bug you. You are his mom. You and the Doctor are doing what is best for him. No one has the right to say how things should be done they are not in your shoes. Just delet and do not read any comments that go against what you feel is right for your son. I feel you are doing good for all that has fallen in your seat. God Bless.

I'm glad he had a great appointment and didn't have to have a blood draw today. Good doctor to recognize that!! I agree with others and think the startle business is just normal stuff, too! His body is growing so much daily and adjusting to all these new things - it just happens.

Keep trusting yourself - you are a wonderful mother and are doing what you need to for your son. I agree with another poster on here - don't worry about the comments on the drugs. You are doing what Jonah needs and that's all that matters.

Enjoy your dinner date with Matt - that is AWESOME!! Just enjoy being together - couple time is so important!!

Glad the appointment went well! Don't feel the need to justify yourself or your choices to other people. There will always be negative people who wan't to put in their two cents. But the truth is they aren't in your shoes and their negative comments don't matter. You are Jonah's mom and you know what is best for him! You and Matt are doing a GREAT job!

I have followed your story since Jonah was born and I think you are absolutely amazing. I am happy that you feel so comfortable telling us your story and sharing your ups and downs. I have sat and cried tears of joy and tears of sorrow. Prayed for healing and prayed to thank Him for bringing Jonah this far.

I wish that some would take the advice that our mothers gave us when we were little, "if you can't say something nice, don't say anything at all.

Please remember that there are thouseands of people praying for you and lifting you up. We outnumber the meanies!!

I agree with Heather. I would vaccinate a baby who can catch anything. Good call, Momma! I am glad he's doing well. In time he will start smiling, cooing and laughing and it will be music to your ears! It will happen! Jonah is beautiful through and through. I continue to pray!

I can not believe that someone would make a comment like that. You are donig a wonderful and amazing job with Jonah. I hope that I am half the mother that you are!! You keeping him on morphine is the best for him right now!! And you vaccinating him, is a very important thing to do!! You are an inspiration to me, not because of Jonah, but becuase you are a good person and you are a wonderful mother!!!!!!!!!!!Have fun out with your husband, you def deserve it!! Dont feel guilty one bit, your family that loves him and he is safe with is with your beautiful Jonah. It is really important for you to be able to get out once in a while. The statle thing is normal, my son did it too:)

Normally I'm a lurker but now I find my self wanting to comment yet AGAIN...lol

Patrice: You are a good mommy. Repeat after me: "You are a good mommy." In fact, replace the word 'good' with 'fantastic' or 'outstanding' or any other positive word of your choice. ;)

We (as mommies and as humans in general) tend to hear the negative so much more loudly than the positive. I saw dozens of comments and I'd be willing to bet that you couldn't help but focus on the two that were a bit negative. I'm so proud of you for keeping your cool and not letting those negative ones get to you. (Although, if you are like me then you still have them bouncing around in your brain.)

I check your blog daily and am always so thrilled when you have good news to report and so sad when it's been 'one of those days'. I will continue to keep you and your beautiful family in my thoughts and prayers. You are an inspiration to us all.

So glad you had a massage yesterday, what a great gift! I was praying the appointmnet went well and happy it did. I did not see the negative comment that was posted, but just ignore things like that Patrice. You and your doctors know what is best for Jonah, your bloggers can only give you their opinion and sometimes some do not use their head. And you were wise to get his shots. You and Matt are doing a terrific job and I know it can be stressful at times, but Jonah is growing and that is good news, all of the other little things will come. So glad to hear you and Matt are having a date night. Have a wonderful relaxful time, Jonah will be in good hands. Continuing to pray for you all.

Every new parent has to navigate through all the uncertainties of "am I doing this right?"... you guys get that magnified. The problem with posting your life in cyberspace is that some people think that that gives them the platform to express their loud opinions, no matter how ill informed the opinions. Ignore or delete those comments and just take in the helpful stuff and the encouragement that the vast majority of us out here want to give.

As for meeting milestones, even with babies who don't face the challenges that Jonah is facing there is such a wide range of age for all those milestones... he'll catch up. I remember reading somewhere that some babies start smiling at 4 weeks and after 6 weeks I was so afraid that my baby was unhappy! He's 4.5 months now and smiles all the time. It'll all happen and your heart will melt all over the floor when he looks at his mommy and flashes that beautiful and purposeful toothless grin!

Oh so happy to hear his doctor appointment went so well. He's doing fine and Praise God for that. Don't ever regret the vaccines when all you're trying to do is keep him safe. Thank you for standing up for yourself and knocking that other person down a peg or two. Considering they haven't walked in your shoes...NONE of us have ANY right to judge you and if anything, I have the upmost respect given what you have to deal with. You seem to be a terrific parent considering such difficult circumstances. Keep on doing the great things you two are doing for that sweet little boy...you must be doing something right if he's growing and getting stronger each day. I hope you have a WONDERFUL dinner/date night. Thank goodness for family! I'm looking forward to my weekend away with my hubby of 16 years in TWO short weeks...woot woot! God bless and give that boy a little squeeze from someone who prays for him daily! Sending you lots of hugs (( )) (( )) (( )) for support and strength.

Thank you for sharing your story! You are an inspiration to so many people. You and your darling family are in our prayers often. Continue to cling to the Lord and you family, with them all things are possible. Loves to sweet little Johan.

I think that every situation is unique, maybe the negative comment was about something that happened to that person at a different time.

You would not believe the negative feedback I got for vaccinating my little guy who has Down Syndrome and a rare heart defect (open heart surgery at 9 weeks old!) But we did vaccinate and now he is a healthy 7 year old!!

I think you two are doing a fantastic job! Jonah is lucky to have the two of you as parents...and of course, y'all are lucky to have such a sweet, beautiful baby! I love your blog and enjoy reading it and seeing his sweet pictures. I actually have you as one of my "favorites" on one of my blogs.Have fun on your date :)http://tutusandchoochoos.blogspot.comandhttp://wemissyougrayson.blogspot.com God Bless you all, Kelley

Patrice, you are a WONDERFUL mama! Obviously comments that are posted by anonymous readers aren't that important, else they'd post an identity!

So glad the appointment went well...I always took my son to get a small, age appropriate treat after shots (even when he was a month old!)...it made me feel better for him having to go through the annoyance.

Way to grow Jonah! Glad the appointment went well. I had not even thought of shots giving him more blisters...hope it will not be bad. I think you are making some wise decisions with Jonah's care...not that you need my approval! Sorry you have to deal with inconsiderate people.

I had almost left a comment yesterday about his startles. My niece did the same thing at 2 months, and it turned out to be reflux. Maybe Jonah's startles were a one day fluke, but if it sticks around, we'll pray y'all will figure out what is causing it, and be able to help him.

goodness. i cannot imagine what it's like to have so many (like me) commenting. strangers. with big hearts, but also. strangers. some with more to say than others. : ) i tend to comment because little jonah looks much like my brother and your tales hit so close to home - now as a mom and thinking back as a big sister. it's hard enough sometimes with family. ;) my parents chose to let my brother with eb live like a normal boy. i had an uncle who was, and still is, scoffing that they did not build him a little bubble. remember that this is all new to jonah's family, but to jonah - this IS normal. so, too, is advice for new mothers from strangers with BIG hearts, but... ya know. God's blessings as you prune and pick through all these comments, gleaning what inspires and restores you the best!

I hope you don't let those ignorant comments get to you - you are wonderful parents and no one can possibly say what they would do in your situation b/c they're not in your situation. Jonah is so blessed to have you and Matt for his mommy and daddy - I feel certain no two people could do a better job for him than the two of you.

As for the startle thing, my son had reflux and did that same thing - that's actually what took us to the doctor and led us to discover the reflux. So it is absolutely normal for a baby w/reflux. One suggestion : you may want to tweak his medicine a bit. We went through 2 medicines (prevacid & I believe the other was nexium...something that started w/an "n"...) before we settled on prilosec - that one REALLY did the trick and made him comfortable.

Keep up the great work & enjoy your date night, you guys definitely deserve it! Blessings to all three of you. :)

I wish people that do NOT have a medical degree or a child with EB would stop giving you unsolicited medical advice. From reading your blog daily, I am SURE you, and your doctors, are doing what is best for Jonah. Especially since he is YOUR child and no one could possibly love him like you do. (Except Him!) To those people I say, "Just hush up and pray!" God bless all of you!

I'm so glad Jonah's appointment went well. It is so hard to believe he's 2 months old.

I just wanted to say good for you for standing up for yourself. YOU are his mother, and YOU get to make the decisions for Jonah,(with a little help from God and the dr.'s of course). I know it may not always seem like you know what you're doing, but you know what's right for your child and you will do what is best. Just keep your focus on God and Jonah and let those negative comments just roll off. Oh, did you mention something about a date night? What in the world is that? My little boy will be 3yr old May 10th, and it seems that I vaguely recall something maybe called a date. lol Anyway, have fun whatever it is!HAStill praying AshleaLexington, NC

Yeah for date night! Yeah for parents! I'm so glad that you have such a great family.

You are such a great mom. I can't believe that this is your first baby. It took until my second baby to find my inner Mama Bear. I think you're totally right in every choice you have made so far. Like you said, until someone's in sweet Jonah's shoes they have no business criticizing pain management. I've heard the whole delay the shots thing, autism and reactions and all, but I agree, why chance it? I'm sure your Dr. told you that seizures usually have a rhythm to them in babies so I agree (cause ya know, my agreeing makes all the difference:) that Little Man is just an overachiever in the startle area.

Bless you hon! I hope that you and Matt have a fabulous night. Tell your parents thanks from all your blog fans for giving you guys the break you deserve! Prayers from UT...

i just love your sense of humor, after all is what you have to do, right? We always say its laugh or cry and try to laugh as much as we can.SO glad you are getting out on a date with your hubby. It is as important as Jonah's care. That I can attest to, having a 9 year old son with special needs.Ignore those who give advice about meds, you are his Mom and you know what is best for your sweet boy. I don't think I know anyone strong enough to handle his pain. Hope he loved his burger... :)

As the old saying goes "if you can't say something nice, then don't say nuffing at all".

You & Matt are the most fantastic, awesome parents around. Like most everyone else has said, trust your instincts, your doctors & what God leads you to do. You are Jonah's mama & daddy, you are with him almost 24/7 (Yea for date night) you know him better than anyone. You nor Matt would ever do anything that would cause him pain or suffering..you do the absolute best & that is all anyone can expect.

Of course all of us want to think we know best about every situation. I have never walked in your shoes, I wish you, Matt, Jonah & Gabe did not have to, but God made this decision and my belief is that God does not make mistakes!!!!!!!!

Jonah is a miracle & you & Matt are great parents!!

Talk about Jonah not smiling, go back & look at some of those pictures you have posted in the past few weeks...there are smiles there. On his lips & also in those eyes...those eyes reflect his feelings & Mr. Jonah is one HAPPY boy.

So thrilled that his appt went great, no blood draw for sweet baby Jonah & now grandparents get to spoil him for a couple of hours (I wish I was his granny) & you & Matt can have some one-on-one time..YEA!!!!!!!!!!!!!!

Keep up the great work, keep the faith & know that there are 1000s+ out here praying & rooting for the 3 of you.

Good for you to stand up for yourself and for Jonah to anonymous commentors who really don't know the situation. I try to understand but you have a very unique situation! I am glad that you have a PLAN for removing him. It sounds very sensible and doable. Also, you went ahead and protected your dear one against KNOWN diseases. We don't know that there is a connection to autism and vaccines. It is BEST and you made a wise decision. I am all for people making some choices but when it comes to effecting the health of other children/people you have less rights. Swine flu anyone? I am glad it went well today and I am so glad that you are going out (gee, you must be leaving right now!) together. We had lunch together today minus all children. I call that a date. Thanks for keeping us posted, making yourself vunerable but most of all for giving us the priveledge to get to know Jonah and the priveledge to pray for him and your whole special family. Jennifer in Southeast, NC

No matter what advice is given by anyone, especially strangers, you continue to seek God and do what you feel is best. You are doing a completely awesome job with a more than difficult situation. May the Holy Spirit guide you. Lord please help this family. In Jesus Name. Keep up the good work!

I am so glad that his appointment went well but most of all, I am excited that you and your hubby get to have some time alone together! I hope you can relax some and not worry about your little one. I am so sorry that people leave negative comments on your blog, if people don't like what you are doing than they shouldn't read your blog!

Don't listen to mean/stupid/ignorant people. I was put on Morphine once. I was instantly addicted and had withdrawls for a week. (I'm not kidding/exaggerating) It's a horrible drug. But your little man needs it, and you ARE doing what is right, and you are his Mommy. And in my personal opinion, you're one stinking awesome Mommy! And good for you on the vaccines. He does definitely need them, especially in his fragile state.Have a wonderful date! You definately deserve it.

I'm so glad everything went so good today :) Please don't pay attention to those who just don't understand about the pain management. These babies NEED their meds to get them over this hard hard part. If it wasn't for the drugs many babies would go into shock from the pain whether it be from EB or surgery. Our prayers are with you.

It makes me so mad that an "anonymous" reader would have the audacity to criticize your decisions! It's easy for a mean spirit to hide behind anonymity sometimes. Why don't you disallow anonymous comments on your blog - that would show 'em!

Patrice - I am a 63 year old grandmother and I stand in absolute AWE of what a wonderful job you are doing with this precious child! Sweetie, God gave YOU this baby and He will give YOU the wisdom to make the right decisions for him. Keep depending on God and living in the confidence that comes from being filled with His Spirit. I pray daily for Him to guide you and bless you in all that you do.

I am so glad it went well:) We have a geneticist appointment in September too... are you seeing someone at Baptist or going elsewhere?

As for facial expression, Ethan's expressions have always been a little different... pain in movement and tight skin have caused him not to move his face as much as a typical child. We also have speech issues related to this too. He was a very quiet baby & is very hard to understand now.

I think the growth sounds terrific:) Yay!

Have ya'll started working with the CDSA yet? If you need contact info, let me know.

If you ever feel up to an outing or a visit, let me know:) Ethan is begging to meet Jonah:)

Patrice, Matt, and sweet baby Jonah, I have been reading your blog since Jonah was born and have never left a comment as I feel I could never say the right words. So, I am going to give it a try. I think you and Matt are the two of the most amazing people that I actually do not even know! Jonah is so blessed to have the two of you as parents and one day he will let you know! I pray hard for all of you and see God working in your lives.

I also wanted to share with you (you may already know) that I recently discovered that Lilly Pulitzer's "A Colorful Cause" collection is to benefit EBMRF in the fight against EB! How wonderful to help and raise awareness!

Patrice, So glad you and Matt are having a date night! I hope you have a wonderful time.

Praise God for a good appointment and the 25th percentile. Your feedings are doing the job, even if it seems he isn't getting enough at times. I always found good doctor appointments reassuring, as our little guys both had slow weight gain issues and my husband and I stressed about their eating so much. You are doing a fantastic job.

I hope Jonah enjoys his midnight (or breakfast) cheeseburger.

I pray for you, Matt and Jonah as often as God brings you to mind, which is daily. Blessings!

Good for you and Matt for going out on a date. It is still important that you guys spend some quality time together. I think you made the right decision in getting Jonah vaccinated. It is so important that he is protected from everything that he can be. Just remember, if you feel that it is right for him, then it is right. Mother's intuition reigns supreme over all! I've been following since Jonah was born and pray every day for him and your family. Enjoy your date!AysaAtlanta, GA

Don't worry about the thoughtless comments regarding morphine or vaccinations. YOU are Jonah's parents, and YOU know what's best for him. People always think they have the right answer, but it's easy for them to sit back and tell someone what to do when they've never dealt with it themselves.

Your blogging is such an inspiration (yes, even your lowpoints because we're all human!) Jonah is blessed to have such loving parents. The three of you are in our prayers.

(And just a sidenote: you probably already know this, but if people seem to be hiding behind the "anonymous" tag to make nasty comments, you could always disable anonymous comments on your blog...just a thought for the future).

So glad to hear that Jonah had a nice doctor's appointment! :-) You are an awesome mom and don't let anyone tell you different- ever. Looking forward to seeing more pics of that little guy! I love those big, blue eyes of his.

You make me laugh so much! I am so glad you reward yourself with cheeseburgers, I totally do the same...especially after a hard work out...why not? So glad you got good news today and I am so proud of you and Matt for going to dinner. I hope you enjoyed your time together. Love you guys.

Take the negative comments with a grain of salt. Look at all the positive comments and people who are praying for your precious family. I bet the entire time the two of you were out to dinner you were thinking about Jonah and wondering what to talk about-how would I know? Well I am a Mom of 4 kiddos. We had a date last night-long over due--lots going on in our household as well- half way through the philharmonic, at intermission my husband was contemplating having us head home just so we could be there to put the kids to bed. We decided to stay and all 4 were wide awake when we got home. Jonah will catch up-he is just dealing with so many things that his body is focusing on the main thing-healing. Anyone who has ever had to make a heart wrenching decision concerning their child, understands the heart ache and self doubt. No one needs someone else throwing in their negative comments. Jonah is a wonderful blessing and he has the best parents and God knew that Jonah needed you and no one else would do.

I'm so glad Jonah's checkup went well! I prayed for it to go smoothly, and am so glad he's on track! I thought about you as I took my oldest child for her 9(!) year well check today. She was very sad b/c they had to boost her chicken pox vaccine - it blindsided both of us! Thankfully it was only one shot, though!

Anyhoo, Caroline is my child that can take or leave eating. She's been tiny from day one, and today at 58 lbs and 49.5 inches, she's still in the 23% for weight and 8% for height! (A huge improvement, considering she wasn't even on the chart for a long time!) I know I don't even have the right to compare our two children, but wanted to offer at least a little encouragement on Jonah's eating. I know his nutritional needs are very far-reaching, but am confident he's going to get all he needs. Plus a cheeseburger every now and then. :+)

First of all, I'm so glad you two got a chance to be alone and get a break. Though I'm sure it flew by. Second of all, don't you love people who tell you what you should and should not do? When people do that to me, I feel like saying "oh my gosh, you are so right, I'm gonna run out and do just what you said because I can't make decisions for myself. Besides the fact that I don't know you from Adam and you're such an expert in a situation you know nothing about." I'm just assuming they know nothing about it. :) Anyway, anyone who knows that their child is in pain wants to make that pain go away. If pain meds is what they need, then that's what they're going to get. If the docs tell you how the process works in weaning him off gradually then their opinion is all that matters as far as expert opinions go. Just know that as a mother myself, I would have done everything you've done as far as the so called questionable decisions go (i.e. circumcision, vaccinations, pain control). I don't know if anyone criticized you about the vaccinations or not, but vaccinations have been proven to do way more good than bad. I'm glad he had a good appointment. As far as his reflex that you're concerned about, my new niece (just a few weeks older than Jonah) will do what is called the moro reflex at random times. My daughter did it too when she was an infant. It sounds similar to what you're describing. It is totally normal if that's what it is. It's actually not normal if they don't have this reflex. Anyway, you probably know about it but I thought I'd share. :) Jonah is in my thoughts everyday and I will continue to pray for him.

Okay, I have only commented a few times with prayers and encouragement, but have to say as a native North Carolinian, "CookOut Rocks!" It is the best burger ever. I was down in High Point this past weekend for the furniture market, and my greatest regret is that I did not get to go to CookOut!Every time you eat a burger from them, you just remember that a mom in Williamsburg, VA is not only praying for you, your family, and Jonah, but is also insanely jealous that you get to have those awesome, amazing burgers any time you want. Hmmph. I don't know if I can take the envy. Put another picture of those big blue eyes up, and I guess I will keep coming back. Love to you all, and stay strong in the Lord. Elle in Williamsburg (and Wade, Henry, and Eleanor, who adore their Jonah fix, but have not yet been introduced to CookOut by their clearly slack Mama)

The third month of life was a big milestone in my children's lives...that is when my kids really started smiling, cooing, and developing their own personalities. It is great to hear that Jonah continues to grow and is in the 25th percentile of the growth chart. He is such a fighter and has come such a long way. And you both are wonderful parents. Enjoy your date tonight. Thank you so much for the update.

I love reading your blog! I have 4 little boys and one of them was born a month before Jonah. The fun thing to me is that Jonah shares his birthday with ME! I think February 27th is the greatest birthday ever=)

I wanted to add that my youngest who is almost 4 months old STILL startles himself like that and screams like a wild man out of nowhere. I think it's just an infant reflex that will go over time.

Thanks for sharing Jonah's life with us. I had a aunt who had a similar disease, only her's wasn't a blistering disease. It was a sloughing of the skin disease, as I understand it. She lived a normal life, other than occasional flare-ups and was even able to have children.

I have been praying since the day Jonah was born and have passed his name along to my Bible fellowship class, friends, family, and on my blog. So many here in Kentucky praying for him!

So.... don't let other's motherly advice get you too upset...Jonah has been given to you for GOOD reason! Because you two are already amazing parents! The Lord says, ask for wisdom, and He will give it! Only you and your husband can make the final decisions on sweet Jonah, and I know you are doing what is best! God gave Jonah to you and your husband, because HE knew you would make the BEST decisions for him! Isn't that amazing? Blessings to you sweet sister....my family prays for you often.

I guess that morphine comment was meant in Jonah's best interests, however it was said extremely rudely and was very uneducated. You don't just stop morphine "NOW", have you ever heard of withdrawls? A nicer way to say it might have been "have you considered taking Jonah off morphine, is that a possibility?" Some people like to spout off without thinking.

As for vaccines: Oh please, never listen to those anti-vaccine campaigners. Those people are freakin' nuts. No seriously, I work with autism and the rubbish I've heard from those people, they are zealots on a very dangerous campaign. (Vaccines do NOT cause autism btw, that's been proven). Delaying shots can be deadly, Jonah could be exposed to things like whooping cough which would be a nightmare for a child like him - and could certainly kill him. Not to mention what measles or chicken pox would do to his EB skin. DO NOT LISTEN TO THEM!!!!!

You are such an awesome mama!!! Jonah is still in my daily prayers (as are you!)

I just wanted to share something, on the off chance it makes any difference, but please don't take it as me thinking that y'all aren't doing absolutely EVERYTHING you possible can for your sweet boy!!! When my daughter was on morphine, she had some bad reactions (like not ever fully seeming relaxed or asleep). One of her ICU doctors put her on a medicine called Nubain, which counteracts some of morphine's effects (but is also a painkiller) - it almost immediately made her side effects from the morphine go away. They eventually switched her from morphine to oxycodone, and her pain was very well controlled on that (actually better than the morphine) - she had a whole pediatric pain management team working for her, and that seemed to work the best for HER (but I know every baby is different!) Again, you and your doctors know best, just wanted to share that little piece of our experience.

You guys are amazing. I have been reading and praying for you guys, but this is my first comment. We went to church with Peyton and Amy in VA and had a little guy in the NICU for 10 weeks at Georgetown with multiple life threatening complications who came home on Opium (we were weaning his morphine as well). Never could have dreamed I would be giving my newborn Opium every day, but there are a lot of things I never could have dreamed. All that to say, you are following the docs orders, doing what you are told, following your gut instincts and are being exactly the parents that he needs you to be. I hope to get your email from Amy to email more to you, but just wanted you to know you are being prayed for in Nashville. Love, Kelly Speck

I am so happy that the appointment went well, my son reacted the same from the needles, however he only had 2 needles (one in each thigh), way to go Jonah, what a tough guy!

I am relieved that they put off taking blood for now, it would have been a lot for him to deal with at once, I will pray for him when they do do it.

Patrice, I had some wonderful close friends tell me something that I will tell you, trust your gut! God chose you for Jonah's mommy, and if something just doesn't feel right, or does feel right, trust it! I have followed mine since I was told it, and it truely is awesome. You are awesome, and an amazing Mommy for Jonah, he is truely blessed! HUGS!

I have to agree with the doctor about "hospital babies" being a little behind...Bryson was...but they do tend to outgrow it and catch up when they're older, so don't worry about long-term. Bryson didn't walk until he was 15 months old...and then it's like he caught up on everything at once. I think you guys are doing a wonderful job with Jonah, and think you are making good choices for his healthcare. As for your anonymous friend...wonder where they got their degree? (Remind me not to go wherever that is...) Anyway, hope the date was wonderful last night, and that one day Jonah will enjoy his Cook Out burger afterwards... :)

Yay for date night!!! I hope you and Matt have a wonderful evening even if it only is for 2 hours, you need and much deserve it. I love when my husband and I are able to escape from reality and just enjoy one another and I know you need this much more than us.

You are doing an amazing job with Jonah keep your head up high and keep loving on that precious little boy. God with give you strength and wisdom.

ps...this lady at my church who has been keeping up on your families journey since I told them about you guys when Jonah was born told me she was visiting her family in Concord, NC this weekend and there was a huge article about Jonah in the paper. She is hoping to bring it back this week so I can see if. Let me know if you would like for me to send it to you.Cindy

I'm always amazed at how people so boldly tell others what to do with their children without even being asked -- especially a child with such unique challenges as Jacob! I agree we all have the right to our opinions, and discussing/arguing about them might be fine with a friend or in an appropriate setting. But, really? On a personal blog? Someone feels they should tell you what to do? The only thing I feel OK "telling" you to do is to hang in there, keep relying on your faith and our God, and trust your God-given Mommy gut! Everything in life has risks -- morphine, vaccines, riding in a car, eating dinner in a place you did not cook, going to the grocery store! Only you can decide what is best for your family. If others disagree, I think we should keep it to ourselves! You are doing a great job, and parenting is a marathon not a sprint. So, taking time for your marriage is such a good idea. I hope you had a fabulous date with your sweetheart! Here's hoping for no more mean comments.

Patrice...... YOU GO GIRL!!!! I am so happy you and Matt got to go out on a date. And, it sounds like little Jonah is moving right along schedule. You are GREAT parents. You handle negative comments very well. Stand your ground! I am praying for you all, as usual, but with a kick.

Date nights are good for any couple. Even better for you, but I'm still jealous. I love date nights w/ my hubby! Yeah for a good appointment. Good for you for standing up for yourself. Only you will answer for the decisions you have made concerning your child.

Being his parents you have to make the best decisions for him. Don't worry about what others think. He is your baby and you do what is right for him. You are doing great and it sounds like Jonah is growing well :)

Ignore anonymous people with nasty comments. What nerve to say things to you like that.

Glad to hear his appt went well. That he is gaining weight like a champ, that he got his shots over with, etc.

I am really happy that you and Matt will have a date. That is really going to pump you back up and put some wind in your sails again. A little normalcy, husband and wife style.

And just as an FYI there is a GREAT breastfeeding site, www.kellymom.com that answers about EVERY breastfeeding question out there. And yes, ice cube trays are the BOMB for milk storage. Freeze then put cubes in your regular freezer bags...saves a fortune!

I'm so glad the dr appt went well! And yay that you can wait for the blood draw! I hope your date night went well yesterday. I can't imagine having to deal with everything you do every day. Sending up prayers for continued clarity and wisdom and peace for all of you!

God chooses special people to be parents and extra special people to be parents of a special child. Even parents that have ""normal"" (whatever that may mean) need a break sometimes. Enjoy your date night. You have a very special son. I send him virtual kisses.

Dear Sweet Patrice:Sorry that I haven't been in touch lately...got busy and have only had time to read what's been going on with you all...however, I have NOT been too busy to pray!!!The butterfly mobile that Hannah colored for you all is hanging by the door and everytime I see it I pray for you all!Isn't Gina the best?!?!!!! Praying that you and Matt enjoy your date night...and that bandage changes go well too!Lots of love and hugs...and I am still working on that other scrapbook for you...just ordered more ink cartridges:)Kiss that adorably sweet baby boy for me...not Matt (LOL) but baby Jonah:) hehe

Please don't let the haters get to you...all we can do is pray that satan leaves their hearts. As for you, I can only hope I'm as dedicated a mom as you are to Jonah when I become a mother. You inspire me! Thank you, and as always praying for the Williams family. :)

Oh people just need to shut it. Seriously. You've got the world on your shoulders, you don't need an anonymous commenter causing stress. Geesh!! My son used to do the startle thing too. Later, when he was about 9 months, he would get so excited about stuff, his whole body would shake and he would shake his hands -- it FREAKED us out. Then we saw some baby on America's Funniest Home Videos won 10 grand for doing that...we worry so much about them!! It's so normal. And good decision with the vaccines. I broke up a couple of my son's, so he didn't get too many on one day and it made ME feel better. I think about you often!

I think the startle you're seeing from Jonah is the Moro Reflex. My daughter did it to, until about 10 weeks old or so, maybe a touch longer. Basically, when they are on their backs, sometimes their equilibrium goes flooky, and they feel like they're falling-- so they "grab out" with their arms, and sometimes cry. I read up on it, and it usually goes away by 3 months. So hang in there!

PLEASE PLEASE take comments on your blog with a grain of sand. The bottom line is that YOU are Jonah's mommy. YOU spend 24 hours a day with this little man and YOU know best... period. Our DD was on narcotics for so long after her open heart surgeries that she had to go on methodone for withdrawal. I caught flack for that but there is a point when you just do what you KNOW is best and call it a day. Jonah is doing fabulously and YOU TWO are doing fabulously! I would challenge anyone who wanted to give "advice" to please walk a day in your shoes. Glad to hear the appointment went well! Praying fervently here in Kentucky!

What a joy to see such a happy, adorable baby!!!! I have been following Jonah's life and praying everyday for you all. You are such an inspiration! I have an eight year old granddaughter with cp and you all remind me so much of my daughter and her family. May God continue giving you strength!

To the person that told you Patrice to get him off the Morphine now......what a fool they are.To that person and any others thinking it do you not know that sudden withdrawal of a med like that is more harmful than good!?!?!?!?!Patrice you are doing a wonderful job...just remember that when people open their mouths and spout off garbage. My mother taught me that if I didn't have anything nice to say then say nothing...if more people did that this world would be far better off.I am a mom of 3 and getting your at risk son vaccinated....good for you! Keep doing what your doing!Jonah has a very difficult disease to manage and you are doing what must be done! God Bless you and your family!

You don't know me but I came upon your blog the day your sweet Johan was born. I have been checking in now and again ever since. When I read your post tonight, I was both sad and angry when I read you justifying your decisions for YOUR child! Although this is an open blog, no one has the right to judge you on how you raise your child or the decisions you make regarding his pain control. I am a mother of 3 and also a person who lives day in and day out with an extremely painful chronic neurological disease. I HAVE to take pain meds every single day and I must say, before I became a client of a pain clinic, I would suffer every single day. At first I was terrified to take the meds as I feared I would become addicted to them but then my Dr took me a side and asked me a question that literally changed my life...he asked me "if I would withhold meds from a person who had Diabeties or not allow a person who had cancer to be treated with chemotherapy"? Of course I said no. He gently took my hands and whispered, "then why would you withold pain medication from yourself when you so badly need them"? I looked at him with tears in my eyes and all of my fears slipped away. I am not advocating for you to keep Johan on the meds if YOU don't want him to be however, I just really want you to do what you think is best by observing and knowing your own little boy. Listen to your mother instincts...they are probably one of the best gifts God gave us mommies. Your a great mother and your husband is a great father. Please don't let any dumb asses make you feel differently. May God Bless You and Keep You and your sweet, beautiful Johan in his arms. Sincerely, Your Stranger Friend from Canada, Jenn :-) P.S. Please give that beautiful baby a gentle cuddle from me! I just love his eyes, he is so expressive and although he may not be smiling much with his mouth just yet, he sure smiles with his eyes! Thank you for sharing him with us all! How lucky we are to have "met you, your husband and of course, Johan and sweet little Gabe.

I just learned of you child Jonah and what you have been through by seeing the blog address on a mega prayer chain that I belong to in Winston-Salem NC, it reaches out all over the US. I just wanted you to know that I to will be praying for you little boy and the both of you. We do not know why God lets things like this happen, but we do know we have a great and mighty God who is able to heal and make your little boy better. Lean on Jesus and He will bring you through this. Sending my Prayers.JoAnnWinston-Salem, NC

I stumbled upon your blog through another blog and have been reading about your journey over the past few days. You are an inspiration to all mothers. Your faith and love for God is amazing. Jonah is blessed to have a mother like you. Your blog will continue to be something that I will read and I will be adding Jonah and your family to my daily prayers. I have asked my church family to also pray for your precious little boy. God is all powerful and loving. He knew what he was doing when he blessed you with your children. It's good to hear that he did so well at his appointment. Jonah has so much on his plate and he still takes it all in stride. You are the only ones that are capable of making the right decisions for Jonah. Keep your head high and be confident that you are doing what's best for your little boy. (Though some may be trial and error.) May God bless you and keep you.